And I always get nervous about these. I guess it's because I feel guilty that it's not "bigger". I feel guilty because people are taking time out of their lives to come and walk with me. I know I shouldn't feel guilty or even the slightest bit anxious, but I do. I feel that if something goes wrong, it's all my fault because I didn't put enough time into it, but I honestly just didn't have as much time this year.
This is the last big thing on my plate for the rest of the year. Our house is picked out, the Lilly Day of Service is done, no more photography sessions the rest of the year....now it's time for some rest.
I do have a little bit of concerning news, though. I have a group on Facebook of women who have FSGS that either want to get pregnant or are pregnant. Anyway, there are 25 of us, and at this time, there are 4 that are pregnant and 2 that just had babies. Nope, let me correct that, there are 3 babies and 3 pregnancies, because one of the women just delivered her baby boy, Malakai today at 25 weeks. He's 1 lb 2 oz, and that's about all I know right now. I'm just praying for her and little Malakai that everything works out. They've got a long and difficult road ahead of them, and it's going to be scary.
Another one of the women had her baby early too because little Lucy was showing signs of low birth weight. And another woman that's pregnant posted that her blood pressure is high and she's worried about pre-eclampsia. As if we don't all have enough to worry about with just the kidney disease, but these women are trying to complete their lives and grow their families too, and running in to some problems. It just makes you wonder why it just can't be OK, you know? I mean, seriously....why?????
It makes me think that, even if I could ever get my protein down low enough (which is looking pretty unlikely) that I don't think I'd feel comfortable getting pregnant again. It seems like there are too many unknowns...too many things that could go wrong and I don't have the best of luck. The stakes are just too high for me. It's a sad realization to come to, but I'm being 100% honest with myself right now.
And do you remember that little girl I talked about before that had the kidney transplant and the FSGS recurred within 12 hours? Her name is Macy, and today the poor thing had an endoscopy and colonoscopy. Now, for those of you that remember MY COLONOSCOPY, it was a pretty funny ordeal, but I'm an adult and the situation warranted some levity. But Macy's 5. It's not funny...it just plain sucks. And because of the prep for the procedures, she's dehydrated and now in the hospital trying to get rehydrated. It just doesn't seem fair, does it? You know why? Because it ISN'T fair.
But that's why we walk, right? It's to raise money for people like my pregnant women friends, Macy and me...so that we don't have to suffer and so that we can live freely.
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Transplant / Living Donor Info for me (edited)
I wish I would've had this post ready because I had so many people reach out to me after the last one that wanted to share my info. I&#...
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I'm lying here right now in room 6B of the specialty infusion center at the U of M, and it's not going well My first blood press...
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So, for starters, my blood type is O+, so my donor kidney will need to be O+ as well. HOWEVER....if you're blood type is NOT O+, there...
Thank you for having a walk! I know that ours was even smaller, though am not sure how big because I could not actually go. Want to talk about guilty feeling?
ReplyDeleteAnny and I had to have some of those hard and honest conversations about future kids. We decided, after several years of conversation, that Abby would be an only child. It's not fun to think through that stuff, but it can be helpful to think and talk through it.
I think I may have posted this before in a comment, but I wanted to let you know that not all hope is lost. I don't have FSGS anymore, but I have had two kidney transplants. The FSGS never came back, even though I ended up with a little protein spillage near the end of my last transplant, due the scarring from cyclosporine.
ReplyDeleteStarting Nov. 9, the cellcept I was on will be out of my system (switched to Imuran) and I have to the go ahead to get pregnant. Sure, there is a higher risk of pre-eclampsia and early delivery (they said most deliver at about 35 weeks), but there have been very good success rates with transplant patients. My doctors are all very enthusiastic about me having a baby. If it doesn't work out, we fully intend on adopting.
I know you probably don't want to think about waiting so long, or even waiting for/having a transplant, so maybe what I said doesn't even really help. I have to say, my life is much easier with a transplant, even after two transplants, than it was with FSGS. The swelling is still there sometimes, but not nearly as bad. The side effects of the meds are still there, but they ease up with time.
So IF you do end up needing a transplant, just know that there is hope and there is "normal life" after transplant. Also, know that there are so many of us out there that have already been through it and can guide you through the hard times transplant or not.
The things you write in your blog, really hit home. You don't know how many times, I thought if I just pricked my foot with a pin that water would come spurting out. I thought my skin was going to rip apart and expose my swollen flesh. There were days that I just couldn't go to school (I was in middle school though early college at the time), because I was tired beyond belief and even just felt confused like I couldn't focus on anything.
Anyway, I should be working. Just wanted to thank you again for your blog and let you know us kidney people are here for you. I've been a round the block a couple of times, so feel free to use me as a resource.
Sarah
Atlanta, GA
Sarah in Atlanta, GA....THANK YOU!
ReplyDeleteI can't tell you how awesome it was to read your comment...and I'd LOVE to chat with you more...if you see this, would you mind emailing me? My email is jennjtrunk@gmail.com
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